My Mate Alfie: A Battle With Multiple System Atrophy

Simon Mack
Since the age of 10 Simon Mack has been creating thought provoking creative works to provoke mind and soul to react, interact and consider.

Alfie Preston is a mate of mine.

A London lad, if you could bottle the archetypal cheeky cockney chap then that's Alfie in a nutshell, but this will not be easy to write.

You see Alfie is dying. A 66 year old lovely man with a brain packed with exuberance for life, but the cruel nature of his illness has left him virtually paralysed and almost unable to speak. The name of this wicked condition is Multiple System Atrophy, and doctors have told him he probably has just a few months left.

When I first heard Alfie had become so ill I was shocked. I'd seen him at his beloved Queens Park Rangers just a few months prior, and he'd been on fine form.

At first the doctors diagnosed him with Parkinson's disease. An uncontrollable shaking in his arm allied with a fall on the bus had alerted that something wasn't right. He'd become unsteady, and fearful of being toppled in crowded situations.

What's ensued since is a horrifically fast paced progression that has taken away a proud man's dignity.

I recall seeing Alfie soon after the diagnosis. He was walking with a stick and was having trouble getting about. His sharp sense of humour was completely intact, but his speech was starting to slur making it hard to understand him sometimes. We were at Football and we nipped to get a pie. Being with Alfie navigating the hoards I remember him pausing often. I couldn't decipher if he was afraid of being knocked or if his legs just wouldn't do what his brain was telling them, in hindsight it was probably a mixture of both, but he never stopped smiling.

The doctors administered every medication known for Parkinson's, but whatever quantity they prescribed the uncontrollable deterioration in his condition carried on regardless.

And so it was that Neurologists sat Alfie down to inform him that their diagnosis had been altered to that of Multiple System Atrophy.

I don't know about you but I'd never heard of 'MSA', however a brief gander at Google soon displays the severity of this condition.

"Multiple System Atrophy is a disorder that effects the degeneration of nerve cells in various areas of the brain." "This results in problems with movement, balance and automatic functions of the body such as bladder and blood pressure control." It goes on "There is no remission from the disease, and the average remaining lifespan of a patient after the onset of symptoms is 7.9 years."

Alfie's flat was transformed from a home into a hospital ward.

The sofa was replaced with a bed and hoist, and there were various medical contraptions dotted around to help use the toilet or perform basic tasks.

Alfie had worked and contributed as a father for many years, and did not take easily to having to rely on family for every task. He remained positive throughout, but this vicious condition pays little attention to your feelings, and without much offered to stem the tide the progression has been unrelenting.

In little over a year Alfie has gone from being able to walk, communicate and feed himself to indefinite admission onto a hospital geriatric ward. And whilst even holding up a newspaper is now impossible, the man's cognition is still completely intact. I can only imagine what being faced with this condition whilst cohabiting a ward with those who are not of sound mind must feel like.

In a further twist to this tragedy the local NHS trust declined to fund Alfie's wish to be transferred into a nursing home, and live out his days in calmer surroundings.

Unable to accept her father's plight the cavalry arrived in the shape of daughter Nicky, who set about researching the situation in order to fight the trust's decision.

Nicky remarks "Of every 60,000 applications for care funding only 20 are granted what they are entitled to." "Thousands of people have had to sell their homes to pay for care when it should have been funded by the NHS."

Nicky estimates she clocked up over 100 hours research in order to take the battle to the local trust. Her challenge was ultimately victorious, and just this week Alfie's dream became reality when he was transferred to a care home and away from the geriatric abyss.

Since then his beloved QPR have sent midfielder Joey Barton to pay a visit and lift his spirits, and despite the recent trauma the man remains bright and thoroughly enjoyable company.

Alfie Preston remains an inspiration to me and all those who meet him. His situation doesn't stop him smiling or enjoying the company of his family and friends until his time eventually comes.

It is a privilege to know the man.

I am humbled by your character and good grace.

You can find more information about 'MSA', get involved or even make a donation by visiting the MSA trust at: http://www.msatrust.org.uk/